Tuesday, January 31, 2012

You don't know how it feels

Today was such a phenomenal day for the Cystic Fibrosis community. If you haven't seen my two prior blog posts, read this - http://www.cff.org/aboutCFFoundation/NewsEvents/1-31-FDA-Approves-Kalydeco.cfm

I know I've been bombarding people with invitations to participate in this fundraiser or donate to this or that or come to whatever event. I post a lot on Facebook about CF and our lives with CF and other peoples lives with CF and I know it gets old. Seriously, I acknowledge that it gets completely annoying. I know not everyone clicks on the links I post. I know that not everyone cares about CF as much as I do. Frankly, I know no one cares about CF as much as I do. But the news that came out today is why I do it all. The events that my friends and family and perfect strangers attend and donate to are the things that raised the money that made this drug possible. This drug might not cure Drew, but if it doesn't, the one that does is right around the corner.

I watched a video today about a number of folks talking about their lives with Cystic Fibrosis, and one mom put it best when she said, in tears, that she feels like she's tap dancing as fast as she can to save her sons life. Its like I can't do enough if it will save my baby. I have to over exert my self. I sign up to help at every event that I possibly can. I bug and annoy and bombard people with emails and links and invites, hoping that someone will read them and someone will care and someone will share them too and someone will donate to this cause.

You just can't possibly imagine how it feels unless you are the parent of a child with a fatal disease. You try to live this "normal" life, but it's so far from normal. You do your best to focus on the good and the positive, but in the back of your head you can't help but wonder if all that you're doing is going to be enough to save them. And you get looks from people when you take your kid, who coughs a lot and has a chronic runny nose, out in public. I've given those looks before - "Ugh, how can that mom bring her sick kid out. I don't want my kid to catch anything!". But you can't catch CF. But they don't know that. Sometimes I wanna embarrass them and make them regret judging me but telling them that what he has isn't a contagious runny nose, but rather a progressive and fatal genetic disease that he didn't catch at school, but rather was born with, and will die from. But what does that make me look like, making someone feel smaller and ashamed for judging. I want to educate. I want people to understand, but it goes right back to people just not caring like I care, and I have to be okay with that.

I appreciate my friends and family who want to learn. I appreciate them asking me how things are going and how I'm feeling, from time to time of course. Or just listening when I'm excited about this new drug or some other great news that we've received. Or bad news. I try to find the positive side of most of this. But sometimes I get discouraged when people just don't care or don't care to take the time to understand. I don't know if they're scared that I'm gonna fly off the handle (which I rarely do to anyone but my wonderful husband) or if I'm going to emotionally unload and they don't want to deal with that (again, all things considered I think I'm fairly stable). I know that when your kid gets a bump on the knee, it pains you to see them unhappy and in pain. I don't want to compare our illnesses or fortunes or misfortunes. I just want support.

When you are literally fighting for your kids life, your world is just different. I don't have a choice but to do everything I possibly can to win this fight. It gets disheartening when I am shot down or offered support that never comes through. And I can be mad a sulk about it for a few minutes before I have to pick my head up and get right back out there and keep on fighting. And even if we lose this battle someday, and God I hope we don't, every single second of it - every email sent, every dollar raised, everyone I annoyed and every friendship lost out of sheer misunderstanding - all of it will have been worth it knowing that I did everything that I possibly could for my son. People can judge away, but you really don't know how it feels.

Here's the link to our fundraising page. It will be at the end of every blog post I write for the next couple of months. If you can find it in your heart to help us out, I'd appreciate it.

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"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org